The incredible journey of Thatcher Ulysses

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So, there’s this page I follow called The Mighty. It’s a pretty awesome page that’s committed to raising awareness about disabilities through sharing of stories and blogs. This month, they are focusing on diagnosis; they are specifically asking “if you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?” We know that I’m sometimes uninspired and I miss a lot of blogging opportunities because I get mad writer’s block, but I knew this was a question I wanted to answer and that I wanted to take part in this opportunity. I’m a member of quite a few mama groups, and so I sometimes see mamas getting diagnoses or potential diagnoses of T21; I hope that maybe they can read this blog and understand where I’ve been, and know it’s been a battle to get from there to where I am today, and that they will get there, too.

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Hey mama,

Congratulations! You have a new baby boy, and he is perfect. I know that right now that will make you laugh and roll your eyes and cry all at the same time, because you’re not sure what to feel. You want to be happy that you’re finally a mum. You want to celebrate his birth day. And all you can think about is what they’ve just told you; he probably has Down syndrome.

You don’t even know exactly what that means. You’re a nurse, so you’ve had one or two patients with Down syndrome, but you have spent a very little amount of time with them, and, to be honest, you avoided talking to them as much as possible. People with disabilities make you uncomfortable, and you feel rude if you say the wrong thing or can’t understand what they are trying to tell you. So you avoid them like the plague. You’re not alone, I promise.

What I can tell you, what this means, is that your life is about to be turned upside down. You are going to seek out people with disabilities. You are going to want to read all about them, to read blogs by their parents, to smile at them in the grocery store with a knowing grin. A year and a half from now, you’ll be the one trying to comfort mamas just like you who are dealing with their own demons regarding a diagnosis. It sounds crazy, but it’s true.

You’re going to feel pain. There’s going to be lots of it. It’s going to hurt when your beautiful son gets wheeled away to the NICU because his sats are low and he’s in distress. It’s going to hurt when you can only hold him every three hours, for fifteen minutes at a time because of his jaundice. It’s going to hurt when you have trouble feeding him, and he won’t nurse, and he spends his first 16 days in the hospital, gaining no weight. It’s going to hurt when everyone you know starts sending you articles about families of kids with Down syndrome, and you realize that you are THAT mum. You’re the “special needs” mum that everyone knows. And that’s going to bother you for longer than it should.

You’re going to feel scared. Terrified, really. You’re going to be scared when you find out he has a heart defect and might need surgery. When they think he has sepsis. When you first see him with a big old IV in his tiny little head. When you take him home, and he’s finally off the monitors and you can’t see on a screen somewhere that he’s breathing and that his little heart is beating, you will be terrified. You will spend 23 hours a day watching for the rise and fall of his chest. Even a year later, you will be scared. You will worry about what will happen if you go to playgroups, and what about when he’s in school? How will kids treat him? Will you struggle with getting him the best education? You will always be a little scared. That’s okay.

You will experience joy. You’re going to feel joy when you take him to his first paediatrician’s visit and realize he’s gained more by nursing in three days than he did in nearly three weeks; you’re going to feel so triumphant. You will feel joy every time he goes to the nutrition follow up clinic and gets a gold star, and especially when they discharge you from their services because he’s gotten so chunky. You will be elated when the cardiologist tells you, at a month old, that they don’t need to see you again for a year; and even happier when a year later, they tell you that they no longer need to see you. You will feel joy every time that little head is resting on your chest, and the little arms are wrapped around you, and you realize that your entire world is right there in one little rocking chair.

You will feel encouraged. You will read the stories of others, and be amazed at how far society has come and how much opportunity is out there. You will know that anything is possible, that your son can be whatever he wants to be, and that you will be proud to be supporting him throughout it. You will see what others are doing to promote awareness and it will absolutely floor you.

You’ll do so many things that you never imagined. You’ll talk to everyone you know about Down syndrome. You’ll want to educate people and get the word out, and introduce them to the possibilities that are so real for your child’s future. People will ask you questions, and instead of crying, or panicking, you’ll want to answer them. You’ll be open to educating people and helping to spread awareness about how beautiful life can be, despite a diagnosis. Or maybe even because of one.

Seventeen months out, you’ll still worry about Thatcher’s future, because you are a mom and that’s what we do. But you’ll look forward to all the opportunities that are out there, and be proud of how he is and will continue to squash stereotypes (and break hearts in the process!). The thing you’ll worry about the most will be how much you are going to cry when he finally says mama, or how he will treat his baby sister, on her way. You’ll also laugh every time he flirts with a lady (extra points in his book if she’s blonde) and cheer him on as he walks around the living room pushing a chair.

Sometimes you’ll look back at the feelings you’re having today, and you’ll be sad you felt them, but you’ll know that grieving is a process and that you’ve gone through it and come out okay. You’ll know that how you’re feeling now? That’s normal. But it’s not forever. But today? Today you can cry. Today you can be sad, because your future is not what you thought it would be. But mama? It’s so much bigger and better than you ever could have imagined.

Have you ever seen someone do something that you know was wrong but were too afraid to tell them? For instance…. let’s say you know a good bit about car seats and you see a lady in the Wal-Mart parking lot that has her child in a forward facing car seat and you know that child should still be rear facing and buckled in properly. You don’t know her so you decide it’s best not to interfere because your scared she may get upset or think your crazy.

Cameron all buckled in the WRONG way!

WRONG

I can NOT stress this enough….TELL THEM HOW TO FIX IT!!! I was that mom… the one placing her child, the most important thing to her, in the car seat wrong. I was that mom that would share pictures like the one above on social media sites and never was corrected. I was that…

Today is Paisley’s Birth Day. At long last, she will be here. If you don’t know who I’m talking about, you can catch up here.

This pregnancy has been a long and arduous journey for Natalie and Shawn. They have gone through things that no parent should ever have to. They have been told “Your baby will not survive.” They have been told that they had the option to abort her. They have been told that they might need palliative care. And through it all, they have hoped. Hoped, and prayed, and remained SO strong. Fought, and loved, and cried. They have been through an incredible journey already, and Paisley is not yet here. They have been two of the strongest people that I know.

And I was reminded of this yet again today. I received an email from a relative of Natalie and Shawn, telling me that -I- was an amazing person for coming up with Camo For Paisley. As if I am the one who should be getting credit. And it really made me think. For one thing, Natalie and Shawn’s families were totally the people behind Camo For Paisley. The idea was mine, but they took the tiny bar night I had planned out in my head and made it an amazing, huge event with a huge turnout and a great time for all. They really went above and beyond and put their entire heart and soul into it. So if you should thank anyone, it should be them.

But more than that, I think the people that are at the heart of Camo For Paisley ARE Nat and Shawn. They have been the strongest parents I know, despite every turn and twist in their story. They have stood up for what they believe is right, which is giving their baby every chance to live and love and grow. They have inspired people. And they have inspired me. They have inspired tens of people, probably hundreds of people, with their strength and hope and faith. They are true friends, and they are the reason I wanted to come up with a way to help them. Because not only does Paisley deserve it, but they deserve it. They deserve to be at her bedside every minute that they can, without worrying about having to be back at work or who will pay the rent. They deserve to have a night out at a restaurant or to sleep in a good hotel once in a while, without sleeping at Ronald McDonald House (which is amazing, btw) and eating cafeteria food every day. And, even more importantly, they deserve to have the support, love, and prayers of their amazing family, friends, and community. How could you NOT want to help them?

I mean basically, that’s what friends are for. Friends are there to see the troubles you are having, and to try to ease the load. They are not there to be there when they can. They are there to be there when you need them. I think that Natalie and Shawn have proven themselves as being true friends, and they deserve to have that support right back.

I find that in getting older and having my own family, it is easy to see who your true friends are. Friends are not just people that you hang out with so that you’re not bored. Friends are your support system, and you are theirs. That person who meant so much to you but now only calls you when they need a favour? Not your friend. But that person who will listen to you cry, who will let you bitch about your husband or complain about your kids, or come over when your house is a disaster and you aren’t dressed even though the clock says PM and will look past those things… that’s a real friend. And I know that Nat and Shawn are those true friends to so many people. I was so glad to see last Friday the amount of people that are true friends to this amazing couple. You truly get what you give in life, and it’s absolutely phenomenal to see that in action. Can’t wait to see all the love pouring in on Paisley once she is born. What an astonishing thing to be a part of. Thank you, Borecki family, for letting me see into your world and share in a piece of the love that all of you have.

This post IS about boobs, but not in a fun way, rather, in a “what boobs are actually made for” way.

I thought I’d write a little about breastfeeding, because this blog is supposed to be about our journey with Thatcher, and breastfeeding was a huge hurdle in our journey. I’m super pro-breastfeeding, but I think that if you give it the ol’ college try and it’s not working for you, at the end of the day, it’s not super important WHAT you are feeding your baby, what matters is that you ARE feeding your baby.

So I wanted to share our story for those mamas out there who are struggling with breastfeeding, or those mamas-to-be that have this ideal vision in their head that they are gonna pop out this baby and stick them on the boob, and that baby is going to latch and bond and everything is going to be beautiful and wonderful. Chances are, it’s not. Not all the time. But it will be eventually, and your hard work will pay off. And THAT is beautiful.

So. Getting to my story.

Thatcher was born on a Tuesday around noon, and I think I tried him on the boob for the first time about half an hour after he was born. I had no goddamn clue what I was doing, but I figured that I didn’t know how to push a baby out of my hooha a few hours ago, and I did that pretty darn well, so breastfeeding would be another skill I would conquer. And I did. For a while. He latched pretty darn well, despite a few nurses telling me that he probably wouldn’t because of his Down Syndrome. Apparently babies with Down Syndrome have a poor suck, but not my little man. It seemed like he was born to eat. Thatcher slept in the mother-baby unit room with me that night, in the little clear bassinet beside my bed, and I sat up most of the night staring at him, then googling Down Syndrome, and crying my eyes out because I was sure that he was going to have all of those comorbidities that Dr. Google was telling me that he would have. That’s a topic for another day entirely. Anyway, I was up half the night, but he was a quiet baby, and under the suggestion of the nurses, I woke him up every few hours through the night and nursed him. He didn’t wake up on his own at all, and slept through half his feedings (unlike the baby in the neighbouring bed, who screamed his damn face off half the night). The next morning, a lactation consultant came to see me, and she was amazed with how well T was nursing. His latch was great and he seemed to be sucking like a pro. All seemed pretty well in terms of feeding.

Fast forward to about 1900, and shit hit the fan. We had seen specialists all day, and had multiple tests done including an ECG, and echo, bloodwork, and hearing tests (the typical newborn one and a high-risk one). We were exhausted and overstimulated, stressed beyond belief, but again, that’s a story for another time. So right at shift change, 1900, T starts going into distress. I call the nurse, who comes in, calls the NICU assessment team, and within 10 minutes he has a NICU bed and we are wheeling the little isolette he is in down the halls to his new room.

Since Thatcher had extremely high bilirubin, he had to be put in an isolette with three different lights on him for phototherapy, plus a biliblanket underneath him. He had to wear little fake soft sunglasses to protect his eyes, and they even took off his diaper so that he would get maximum light to every square centimetre of him. He was hooked up to leads to monitor his heart rate, BP, and SPO2, and he had an IV in the side of his head for the sepsis they thought he might have. Since the jaundice was so bad, he had to stay under the lights constantly, so he was allowed out only to nurse every three hours. At 3, 6, 9 & 12, am and pm, I would get to take the stroll down the halls of B-wing from my mother-baby unit bed to the NICU, swipe my little card, wash my little paws like crazy, and hold my baby boy. I was allowed to nurse him for seven minutes on each side, and then he had to go back into his isolette and back under the lights. The nurses told me that since seven minutes wasn’t enough time to get a solid meal, they would supplement him with formula. Nobody mentioned any other options, just that formula would be given. I had bought bottles “just in case” and done my research about nipple confusion and which bottles were the best, so I asked the nurse if I could bring my bottles from home so that he could have his formula in them. The nurse said I could, so I made my mum go to my house and sterilize like she’d never sterilized before, because I didn’t want him to get nipple confusion from the random nipples that the hospital used. If only that was my biggest problem. Ha!

Daddy feeding Thatcher in his isolette after his 7 minute per boob nursing session.

So I got to keep my mother-baby room until Friday, basically because I told the nurses that I wasn’t leaving the hospital until my baby was leaving the hospital. On Friday morning, I had an ultrasound because I had been having some kidney pain. They booked my ultrasound for 9am. I protested and told them that I couldn’t possibly go to an ultrasound at 9am, that my baby had to eat, and my kidneys were secondary. The nurse asked me if I knew how to hand express. Hand express? What? What was that?! In all my pre-baby research, I had spent about ZERO time actually researching breastfeeding. I mean, if babies can just jump on there and latch themselves an hour after birth, how hard could it be, right?! Ha again! So here I was in a hospital room with a med cup, with a nurse showing me how to squeeze my boobs just so, so that I could get some milk out. By this point everyone had seen everything, and I’d been in the hospital four whole days, so I didn’t really give a shit about dignity. It was WAY out the window. So, here I am squeezing my boobs vigorously, with two hands, milking myself like a damn cow, and my husband is holding the med cup for me to catch the milk. You know it’s love when… I get about 5ml out, and I send Devin to the NICU to take my precious milk in to feed my kiddo while i go for my US (which was fine, btw). So, when I come back, the nurse asks me if I’d rather pump in case I have to miss a feed again. Pump? Is that an option? Turns out that the hospital actually has a crapload of Medela Symphonies for mamas to use. But you need to ask, or nobody tells you. So, mamas… lesson #1. Advocate for yourself and your babies. In medical emergencies, doctors and nurses will do what they gotta do, and they will obviously take the easiest route to get the results they need… like giving formula. But breastmilk is an option! You just need to ask the right questions!

So. Fastforward to Friday. It’s noon time feed and my friend Brit is visiting and meeting Thatch for the first time. I’m telling her how great nursing is going. Except suddenly, it’s not. I latch him on, and milk is POURING out of his mouth. It’s overflowing and it’s everywhere. It’s a huge milkfest and someone forgot to tell me. The poor little bird can’t handle the massive tidal wave of milk coming out and he’s basically drowning in it. So, he does what all of us would do. He screams and pushes away, and refuses to latch on again. I try again at 3pm. He will not latch. I try again at 6pm. He will not latch. I think it was around 8pm when we got word that there was a room open on A pod (we were currently on B pod, which is higher intensity), that we were being transferred because Thatch was in the clear with the possible sepsis, he was off the bill lights, and he was managed on oxygen, so we could be stepped down to a lower level of acuity. They carted us and our stuff down the hall and we moved into the room we would call home for the next thirteen days.

By this time, Thatcher hasn’t successfully nursed in eight hours, I’ve been pumping every three hours anyway and we’ve been giving him expressed milk. It’s a tired game… I fight with him to take my boob for half an hour, I give up, I pump for half an hour, and we give him milk in a bottle. Rinse and repeat. I am thoroughly exhausted but I am not giving up. When we get to A pod, we get settled into our room and our nurse, Linda, introduces herself. We tell her our main struggle (besides keeping up his SPO2) is feeding. He suddenly just will not take the boob. He was a champion before! And then it all went to shit. Linda tells us that she is a Lactation Consultant too, and my mind is finally at ease. Then she looks at my gross unwashed hair, the huge bags under my eyes from my trip to Holland, and the tears that won’t stop welling up in my eyes. She tells me to go home. Go home, get some sleep. Try the 9pm feeding, sure, do my pumping, it will give them enough milk for the night. Then go home and get some rest. By this point, I haven’t stepped out of the hospital doors since Monday at 2pm, so it’s been over four days. I’m tired, and I’m broken. My entire future has changed. And I’m not coping. Not one bit. I protest and protest, but she pushes and I agree. I will go home and miss the midnight feed and the 3am feed, but I will be back for the 6am feed, ready to rock. She asks me if I’m opposed to an NG tube (nasogastric tube, it goes from their nose to their tummy and is the quick, easy, and removable way to tube feed), and even though Devin protests, I agree to it. I’d rather Thatch be tube-fed than bottle fed, because there is no risk of nipple confusion this way. I mention to Linda that the nurses had given Thatcher a pacifier to calm him down during bloodwork, and that I would prefer no pacis. Then I take off for home.

An exhausted mama and Thatcher, complete with all my tubes and wires.

It was crazy to be home, and I didn’t get to sleep until about 1am because all I could think of was my sweet baby boy, who I was already so in love with, swaddled in his bassinette all alone in A pod. I sleep until 4, get up and shower, and I am shocked when I look in the mirror. Whose boobs are those?! Did I become a porn star overnight?! Apparently this is the engorgement they were talking about. At least I look skinny now compared to my giant boobs.

So I go back to the hospital. Try to feed him. Fail. He gets breastmilk via tube. Try again three hours later. Fail. Breastmilk via tube. Days and days and days go by. Some days he will take the boob. Some days he won’t. Every time I feed him, it’s the same routine. Every three hours I strip him down, weigh him on the NICU scale, try for 30-45 minutes to feed him, weigh him again, and find out he’s only eaten 10ml of the 80ml they want him to have every feed. Then I call the nurse and have them tube feed the remainder of what he needs. I read articles upon articles about oversupply and breastfeeding. Kellymom becomes my favourite go-to site. I read more than any human should about every solution under the sun. We get a good feed here and there, but in general I feel like an absolute failure. He is gaining basically nothing. Sometimes, he will take up to 50ml per feed and I am elated! But the next feed he will take nothing. Sometimes that damn scale tells me he LOST weight while he was feeding. Cue crying and screaming and hair-pulling on my part.

I see the LC, I talk to my aunt who is a doula. I read and read. We try so many things. We try football and cradle and laying. We try nipple shield, no nipple shield, even putting SUGAR on my breast so he will be encouraged to suck. He falls asleep during feeds constantly, he is always drowsy and never cries; the nurses actually ask if he’s ever cried. So when he eats, I strip him down to his diaper and rub him with cold washcloths so he wakes up. I learn that too much light is overstimulating, so I dim the lights when he feeds. I try everything and anything, and he always latches when the LC is in the room, then refuses to latch the next few feeds. Of course, right?!

Mama and tiny baby bird having a heart to heart about how this late night cryfests (that mama is having) need to stop.

So finally, when he’s maybe 12 days old, he’s off oxygen and they aren’t worried about his heart anymore and he’s good to go home. Except that he’s not, because he’s not gaining weight or eating. The doctors say, “Remove the tube! He’ll eat when he’s hungry. Feed him on demand. Quit weighing him. We’ll weigh him daily.” I hope that by some magic it will work. It doesn’t, not really. We go through whole days where he will eat using the nipple shield. Then he will suddenly hate the shield and want nothing to do with it. He will scream and cry and pull off because it’s like a damn fire hose spraying him with so much milk. The nurses keep telling me how lucky I am that I can pump ten ounces in half an hour, that it’s gotta be some kind of record. If you struggle with low supply, you’ll think that having an oversupply is great, but I can tell you from experience, it’s a battle all it’s own. They always liken it to an adult trying to drink from a firehose, and that’s what it seemed like. He would cough and choke and gag and pull away and scream. The nipple shield worked sometimes only because it slowed down the flow of the milk, like putting a funnel over the fire hose. In his entire first sixteen days of life, he gained somewhere around 61 grams (2.1oz). In sixteen days, he should have gained approximately 388g, or 13.7oz. So, he wasn’t exactly thriving.

But of course, you can’t take up a NICU bed, costing the public thousands of dollars a day, just because you are too stubborn to give up and wave the big white breastfeeding flag. Eventually, you get kicked out. So, about 24 hours after Thatcher was finally weaned from his oxygen, we got discharge orders. But, since Thatch was not gaining any real, substantial weight, we had to follow up with the Nutrition clinic at the hospital in a few weeks, and a dietician came to see us before discharge. She strongly advised me to supplement his feeds with formula. She gave me a giant can of GoodStart, with instructions on it to breastfeed, then pump and mix my breastmilk with formula and give it to him via bottle. I told her I was not giving him formula. So we came to the mutual agreement that Thatcher was to see his new paediatrician on Monday. If he didn’t gain the appropriate amount of weight by then (I think they were aiming for three ounces, or 85g), I was to supplement with the breastmilk/formula concoction.

Off we went that warm September Thursday, back to our home, which had been overrun by our dogs for sixteen days. Which was once deep cleaned, and now looked like a tornado hit it. Where I had been a handful of times in the past two weeks; stopping in to grab one or two things and then jetting back to the hospital. Where I had “slept” (I say that in quotations because it was really more of a nap) a total of two times in sixteen days.

And we nursed. And we nursed. And we nursed.

We went to see our paediatrician Monday. Thatcher had gained 115g. To say I was ecstatic is an understatement. I wanted to take that damn formula and stream it out the car window while driving a thousand miles an hour. I wanted to shout from the rooftops.

But it wasn’t easy. Not even after that amazing Monday. Thatcher started nursing better, yes. But to nurse, he had to use the nipple shield. And nursing in cradle hold wasn’t an option. I had to lay down, put him beside me, then hold up my boob with one hand while supporting him with the other. And he didn’t just eat for ten minutes. This was a 45 minute ordeal. I could watch an entire episode of Property Brothers in one feed. And this happened 8-10x a day.

Even though things were going better, we still had struggles. Sometimes he didn’t want to latch. He was such a drowsy baby, I couldn’t keep him awake through a feed. So cold washcloths were my new BFF. Sometimes I’d get Dev to tickle his tummy or back or feet while I rubbed under his chin to get him to swallow. And at times, I would just sit there and cry. I felt so helpless, like I was so alone. Everyone seemed to be having an easier time than me. I met a girl who had a baby who was a month younger than Thatch, and the baby fed for 5 minutes every three hours. My baby fed for an hour every three hours. Plus pumping took me 20-30 minutes. So basically every three hours, I was a milk machine for an hour and a half. I was spending 12 hours a day dealing with breastmilk. I felt like a Holstein.

But it was paying off. Slowly but surely, he was gaining weight. At four weeks old, he was in the 35th percentile. By 10 weeks, he was in the 36th, and at 13 weeks, we were up to the 52nd.

He used a nipple shield for two entire months. Then one day, he just didn’t. He let me cradle him and he nursed without any extra gadgets or gizmos, and he rocked it. And I rocked it too.

These days, my little bird is eating solids like a champ. He’s in the 78th percentile for his weight, and the 84th for his height. And he still nurses eight times a day. Was it easy? Absolutely not. It was a fight, and if I wasn’t so goddamn stubborn and opinionated, I would have given up long ago.

But was it worth it? Absolutely. He made it through an entire cold and flu season with two VERY mild colds, despite having smaller nasal and ear passages and a compromised immune system. He outgrew his three month clothing in a month. He has beautiful little chub rolls like the michelin man, which are sadly shrinking as he gets more mobile and gets some muscle and loses his baby fat.

So, is nursing for everyone? I’d love to say yes, but in reality, I know it’s not. And whatever you choose to feed your baby, you are making the right decision. You are a good mom. You are doing what is best for your babe. I think that Scary Mommy says it best… Good mothers love their children. That’s what it all boils down to. I didn’t write this blog to pick a side in the mommy wars. I wrote it to tell you, that if you are trying to breastfeed, and you are struggling.. you are not alone. Just because that bitch down the street from you can pop the baby onto her boob at two weeks old and feed for five minutes and that baby is good to go for four more hours… she’s the odd one out, not you. Motherhood is hard. All of it is hard. Breastfeeding is a struggle. You can fight, or you can choose your battles and say, “This isn’t for me.” But know that whatever you do, you’re not alone. I get it. Tons of other mamas get it. But stay strong, and if this is the battle you wanna fight, and breastfeeding is what you really wanna do for your baby… you can do it! It will be hard, it will be crushingly hard, but then it will be easy. It will be easy and it will all be worth it. Stay strong, mama! You got this.

So today is a little about us, but also about a friend of ours and her husband.

I’ll start with the blurb about us. I haven’t really talked about what it was like when Thatcher was in the NICU, but it was probably the hardest sixteen days of our lives. We went in to the hospital to have Thatcher assuming that we would be gone a night or two, and came out two and a half weeks later absolutely shellshocked, to a disaster of a house (my dogs took over and made a blanket fort in our living room, since they were home alone 23 hours a day or so), an empty bank account, and feeling like we had focused on all the wrong things.

It was hard. We had been going through some financial hardships already, and having Thatcher in the NICU, meaning we had to buy parking passes, eat out, etc was outrageously expensive. We also went through an emotional roller coaster. Finding out that we had a baby with Down Syndrome, when we had absolutely zero knowledge about Down Syndrome, seemed impossible to cope with. Yes, I’m a nurse, but I had experience with a total of ONE patient with DS before, and that patient also had dementia, so my picture of a person with Down Syndrome was very skewed and very negative. I was terrified. Add to that the fact that Thatcher also had a PDA (a type of heart defect), possible sepsis, problems with his blood glucose, the inability to thermoregulate, and severe jaundice, and I was absolutely floored. Yes, I’ve had patients on oxygen, antibiotics, IVs, and NG tubes, but having my newborn on all those things plus constant vital sign monitoring was not easy. I can’t say if it was harder or easier that I knew what was going on. I constantly sat around watching T’s O2 sats, digging my fingernails into my palms as they would creep into the mid 80’s despite the oxygen he was on. I cried as I tried and tried to nurse him, only to weigh him before and after nursing him and finding out that he had eaten a measly 40ml of the 80ml/feed that they wanted him to have. It all seemed overwhelming and impossibly hard. There were moments when I wondered if Thatcher would need to go home on oxygen or a tube feed. There were moments I wondered if he would go home at all.

So how did we make it through? For one, I think that Devin and I got through it TOGETHER. We supported each other, we literally cried on each other’s shoulders. We talked a lot about what was going on and what it meant for our future as a family. And we continue to do so to this day, as we start thinking about expanding our family. I honestly think that Thatcher’s rough start gave us an even more solid foundation.

Another thing that helped us immensely was family. We come from totally different upbringings, but we both have strong, wonderful families in their own ways, and everyone was so helpful. My parents came down to visit frequently (they live two hours away), and my mum came to stay with me for a few days after Thatcher came home.

Friends were also so supportive of us. We had so much love coming in via Facebook, people visiting us in hospital, and helping us by popping by the house to let the dogs out. All in all, we definitely felt loved and supported.

So how does this relate to our friends? Well, Natalie and Shawn found out a little while ago that their baby girl, due in June, is going to have issues. She has five heart defects, and will require three surgeries to correct them; one within her first day of life, one when she is six months old, and then one when she is around ten. Obviously, Natalie and Shawn are scared. I don’t know how it feels to have a baby on the way and know that they will need medical interventions; I don’t know how it feels to know that your baby will absolutely need surgeries. But I do know how it feels to be scared, to feel like you are alone because no one you know has been in your shoes before. I know how it feels to have the rug ripped out from under you and be afraid for your baby’s life. How it is to try to juggle your bills while paying for this unexpected expense of being at your child’s side for weeks. It’s hard and it’s terrifying, and I didn’t want them to feel alone, to worry about the bills, to feel unsupported. Thus began Camo For Paisley.

See, Shawn and Nat (read: Shawn) are really into camo. For some reason, Shawn would probably wear it head to toe every day if he could. In fact, they came over for supper a while ago and brought Thatcher an entire camo outfit, just in case he was going deer hunting sometime soon. I got this idea that we could have somewhat of a pub night, everyone could wear camo to support Paisley (camo being a pattern, paisley being one too, it just seemed to fit!) and we could raise some money.

Fast forward a week and a half later, and we have a huge event planned! We are holding a fundraising night full of love, friends, family, and of course camo, to support Nat, Shawn, and Paisley. We have multiple sponsors donating prizes for the event. We have tons of people sharing on Facebook. And the GoFundMe account that I started to help raise money for Nat and Shawn’s expenses while in Toronto? It’s had over $1500 in sponsors within 24 hours!

I couldn’t be more thrilled to see friends, family, and the community supporting our wonderful friends and their daughter. Paisley is going to be born into so much love, it’s astonishing. I hope that we are able to give them the support they need as they go through this scary time, and give them the comfort that they don’t have to worry about anything except for their new family and their little girl.

So, how can you help, dear reader? First off, you can wear your camo on May 30th, and upload a photo of it to Instagram, Facebook, or Twitter with #CamoForPaisley. If you are in the St. Thomas area, come out to our event! And if you can’t make it, consider helping the family out financially at the Camo for Paisley GoFundMe Account. Feel free to leave a comment here showing your support; I will make sure that it gets to Nat & Shawn. And finally, and I’m not usually into this, send your prayers, your thoughts, your hopes, your good vibes. Whatever you can send to help with a speedy recovery and get Paisley strong, to get her home.

Thank you to all the people in our life who have given us support and love. Let’s pay that forward and send it along to Natalie, Shawn and Paisley ❤

So I sit here with so much to say and not enough time in the world to voice it all. Thatcher is FINALLY in bed after a horrible, exhausting day and I’m spent, mentally and physically. Thinking about going upstairs to bed physically hurts. It was the kind of day where Thatcher literally WOULD NOT nap, and screamed for half an hour when I tried to get him to sleep. Pulled my hair. Screamed at me when he was hungry. People think my kid is a perfect angel, but I assure you, he is not. He will tell you when he’s not happy, and today that was all freakin’ day.

I can’t blame him. I’ve been pretty miserable to be around lately, too. I am just frustrated with humanity, basically. Allow me to explain; for the last few weeks I’ve really felt harassed on Facebook. I generally speak my mind, and social media is no exception. But ever since the car seat incidents, I really feel targeted. Sure, things I say aren’t always flowery and happy. If something isn’t nice but I’ve been thinking it a lot lately, it gets a mention. Is that appropriate for Facebook? Probably not. But since my attempt to stay off my phone, I’ve quit Twitter, where I would normally vent my frustrations. On Twitter, people appreciate your honesty. You don’t tweet to interact with people you know IRL, you tweet to make your little internet family that you have a lot of things in common with.

I keep forgetting that Facebook is different. Facebook is a group of people you know IRL, but you only like 60% of them. You add them or they add you for the simple fact that you know each other. That’s it. Some are friends, some are coworkers, some are family. Some, you might have even met at the bar when you were 21 or on a vacation for spring break. But all of them know you on some level.

The problem with Facebook is that you can never delete people. Delete your family members? Get the evil eye and get talked about at family functions. Delete coworkers? Everybody talks about you in the break room. You can’t even delete a friend of a friend of a friend because it will get back to them. So what are you supposed to do, then?

I guess you could avoid all posts that people might find offensive. So, what could those be? Firstly, people hated my chalk board pregnancy photos. So I guess none of those. Then I hear people complain about baby pics. So no posting Thatcher pictures, then. Not to mention that everyone tells me I shouldn’t compare Thatch to other kids, especially typical kids. So I guess posting updates on what he’s doing developmentally is out. Oh, and how about posting an OPINION on something?! How would that go over? HA!

So the other day, I posted a pure opinion on Facebook. For no reason other than the fact that something was bothering me. Like any normal human being, I have likes and dislikes (go figure!). I decided to state my immense dislike for a certain name. And I stated it in a Facebook status. Someone asked me why I hated that name and anyone who names their child this, and I stated that it’s because I see it as a stripper name. It’s got a trashy ring to it, one of those names people think are cute and princessy but in reality they belong in Hustler magazine, like Destiny, or Charity, or Harmony. So I post about how much I hate this name, and I get all kinds of nasty comments. Comments about how I need to be nicer, or more positive, or that I’m “stirring the pot”… even that I need a hobby. I need a hobby?! I haven’t been out of my house for more than half an hour in a week, and when I do go out I’m carting around 20lb of baby, 10lb of diaper bag, 10lb of carseat… I’m sure I have time and energy for a hobby!

So the gist of what people were saying is… don’t voice my opinions. Apparently everyone who commented on my status is allowed to have an opinion, but I’m not. Yep. That seems totally fair. Now to be honest, yes, I do stir the pot every so often. 99% of the time, I don’t even realize I’m doing it. And so I get why people don’t like me. But to gang up on me on my own Facebook status and tell me what a horrible person I am?

It really took me back to high school. I got bullied in high school, taunted and tormented, called names… I got singled out of my group and hated. I actually had to file a police report because a bunch of girls told me that I should kill myself because the world would be a better place without me; one of the girls told the principal what happened and he called police; she later denied it and said that I snitched. When I tried to switch schools, the public school wouldn’t take me. They said they didn’t want my problems. So I was stuck. I was insanely depressed and at times I contemplated suicide. It was a horrible time in my life, and I think people who tell you high school was the best time of their life are crazy. Honestly, nothing good happened to me in high school, and I regularly speak to approximately one person that I went to school with. In high school, was there a reason people didn’t like me? Probably. My likes, dislikes, and values probably didn’t align with them. And yes, I probably ran my mouth a little bit too much. Did I deserve to be alienated, made fun of, and made to feel like a pile of trash? Probably not.

I feel like society is so unaccepting of differing opinions. And yes, I’m guilty too. I’ve said things that were offensive because they didn’t align with my thoughts and ideas. And I know it was wrong. And it’s something I’m working on. It’s part of my whole positivity/ignoring the negative thing. There are people on Facebook that I don’t like, but I can’t delete because then it will become a whole load of drama that I’m not interested in. So I unfollow them, and their posts never show up on my feed. But what am I supposed to do when those people still get my posts, and they start commenting on them and picking them apart? Refuse to defend myself, lest I be labelled a pot-stirrer?! Delete them and have them talk behind my back about how I backed down and didn’t defend my point? There is no way of winning.

So here’s what I propose: We all need to take a step back and realize everyone is different. Everyone has different likes and dislikes, different hobbies, religions, etc. And we accept that. I might hate that you named your kid Destiny. But I’m not going to say it to your face. And I’m not going to say it behind your back. I might tell my husband I hate it, and that’s as far as it goes (husbands don’t count as talking behind your back because they are like a phantom limb or something). I’m allowed to dislike things you say, and you’re allowed to dislike things I say, and it only makes us bad people when we argue about it or talk behind each other’s backs. I am a good person. I’m a nurse, I care about my patients. I buy lunch for homeless people sometimes. I tip 20% most of the time. I hold the door open, not just for the elderly, but for everyone. And I love my family, my friends, and my little bird fiercely. I am not a bad person. Until you tempt me. Until you comment on something and you push my buttons. Then, I’m a bitch. But let me tell you something, button pusher. That makes you a bitch too. So if I post something that you dislike, be it an opinion, a thought, an action, and you don’t like it, scroll on by. Or better yet, go to my page and hit “delete” or “unfollow.” Whatever you need to do. I know I have a lot of unpopular opinions, and I’m not well-liked. Life isn’t a popularity contest. At least I’m not sweet and nice to peoples’ faces and rude behind their back just so everyone will like me. If I like you, you know. If I don’t, you know. And if you don’t like me, I’d rather you just leave me alone. Is it really too much to ask? I want my son to be raised to know that he is allowed to have opinions. He is allowed to have likes and dislikes. Sure, he should voice them in an appropriate manner, but he is an individual with individual thoughts, and he can let them be known. I don’t want to raise a marshmallow. I want to raise an individual. And I’m sure, if you have kids, you do too. So why can’t we let each other be individuals with individual thoughts, and lead by example?

Days like these, when my son has cried probably 2-3 hours of the day, ripped out my hair, vomited on me multiple times, and woken up whilst I was blogging because he was having night terrors, I have a lot on my plate. I am having a hard enough time being a mama. I have enough to deal with without being antagonized. I’m allowed to be grouchy; we all are. Give me my moment to be a grouch; to not be happy 24/7. I’m a human, just like you. You ignore me, I’ll ignore you, and we will all be better people. Even on minimal sleep.

So today is World Down Syndrome Day, and I thought I’d do a little post on what Down Syndrome means to me. I know that the meaning has changed for me even in the past few months, and I think as Thatcher grows, the meaning will continue to evolve for me, but this is the meaning in the here and now.

First, I’ll start off with a brief introduction of what Down Syndrome is, in case you don’t know. I’m going to put it totally in layman’s terms here. Basically, when a baby is conceived, the egg and sperm meet, and each has twenty-three chromosomes. They come together to make a zygote that has 46 chromosomes. Occasionally, the chromosomes don’t divide properly and you end up with an egg or a sperm that has an extra copy of the 21st chromosome. When conception happens with one of these, the resulting zygote now has three copies of the 21st chromosome, for a total of 47 chromosomes instead of the typical 46. This little zygote has what you call trisomy 21 (three copies of 21), or Down Syndrome. There are other ways that Down Syndrome can happen, including a chunk of extra 21st chromosome stuck to mom’s or dad’s genetic makeup, but in Thatcher’s case, he has trisomy 21. A total fluke chromosome that changed our lives.

So, what does this mean? It means that the resulting baby with trisomy 21 has a higher chance of health issues like heart defects, sleep apnea, low muscle tone, umbilical hernia, leukaemia, thyroid issues, and intellectual disability. It means that because of their low muscle tone, they will probably take longer to reach milestones like sitting, crawling, and walking. It means that they might grow slower, gain weight at a less rapid pace, and be smaller as adults. It means that they generally will have a lower IQ than typical people. So basically, it means they have a lot of strikes against them.

I have met a lot of parents of children with Down Syndrome that will tell you how happy they are that their child was born with DS. They say they can’t imagine having a child without it. They are glad their child has an extra chromosome. I can’t say that I will go that far. I love Thatcher exactly how he is, but if I could take away that extra chromosome and still have exactly the same funny, handsome, smart boy that I know and love, I absolutely would. I would love to take away the heart defect he was born with, the sleep apnea that I am pretty sure he has, or the probability that he will need extra help in school. I’d love to not have to worry about seeing our occupational therapist every few weeks (although we love her!), or having bloodwork done to check Thatcher’s white cells and thyroid function. I’d love to never have him do a sleep study, to not have to have his eyes checked so often, to never go back to the cardiologist. So, if I could keep him just as he is, but not worry about all those things, then I absolutely would.

But, in a way, I am thankful for Thatcher’s extra chromosome. It might mean more therapies and doctor’s appointments and challenges, but it brings with it some wonderful things.

First and foremost, Thatcher is Thatcher. And Thatcher has 47 chromosomes, three of them being the 21st. He is exactly who he is, and who he is supposed to be. Again, I don’t buy into all that God stuff, but I think we are here for a reason and I think that Thatcher is Thatcher for a reason. Yes, I would love to take away all the things that come with his extra chromosomes, all the worries and fears and scary things that come with it. But I would never change him. He is who he is. He is not just Down Syndrome, but he IS a child who has Down Syndrome. And I wouldn’t change him for the world. He is the brightest, funniest boy who makes my world turn. He is my reason for getting up in the morning (or at the butt crack of dawn!), he is in every smile. He is my whole world, exactly how he is. He is what I am most thankful for.

Next, I am glad for the Down Syndrome community. I have met so many wonderful people, through our local Down Syndrome association and through online support groups. We also had the wonderful experience of meeting Tara and Pip from Happy Soul Project. I think she said it best in one of her older blog posts, being a parent of a child with Down Syndrome is sort of like being in a special sorority. It’s a family of people who support each other and accept each other. It’s really quite phenomenal how open and welcoming I have found people to be, how they share in your ups and downs; despite never having met you, they help you celebrate your child’s accomplishments and support you on your darkest days. I couldn’t be more thankful for these wonderful parents (and sometimes grandparents/siblings/etc) who have been such a phenomenal support.

I’m also thankful for the strength that Thatcher has brought out in me. In college, I used to make my mum call the phone company or the car dealership or whatever it was, to make a complaint for me. Thatcher has brought out my inner mama bear. By advocating for him, I am learning to advocate for myself. He has also taught me to be strong in other ways. I used to be a quitter. Seriously. I didn’t follow through on a lot. But this whole parenting thing is teaching me to stick with things. It’s teaching me that sometimes, the best things take work (like sleep training! Good lord!). I think this is definitely applicable in other aspects of my life, and I’m hoping it’s going to help me with Weight Watchers : p

Another thing to be thankful for is how Thatcher has changed my perspective on people with disabilities. One of the mottos of the Canadian Down Syndrome Society is “See The Ability.” I think that before Thatcher was born, I didn’t realize the amazing things that people with disabilities, and especially people with Down Syndrome, could do. When he was born, I only saw the negatives, the tests and doctors and special help he would need. But people with Down Syndrome do amazing things! They go to university, they have jobs, they get married. They do all the things we would hope for our children. I actually read today about a young man with Down Syndrome who is a student at the University of Alberta and a member of Lambda Chi Alpha, my husband’s fraternity. I thought, “Uh oh! We are going to have a frat boy on our hands in 18 years!” We are going to have a frat boy. A university graduate. A young man who has hopes and dreams, and reaches them. And if you still don’t see it, keep following us. I have no doubt that Thatcher is going to blow any preconceived notions of what a “disability” is out of the water.

So, today, on World Down Syndrome Day, I am thankful. I am thankful for all the lessons that Thatcher has taught me, and all the lessons I have yet to learn. I couldn’t ask for a more perfect reason to celebrate today ❤